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Stigma surrounding women's sexual and reproductive health (SRH) often prevents them from seeking essential care. In South Korea, unmarried women face strong cultural taboos, increasing their risk for conditions such as pelvic inflammatory disease, infertility, and cervical cancer. While many unmarried women turn to web-based communities for support, these spaces frequently expose them to microaggressions, further discouraging their access to health care and worsening their health risks. We aimed to encourage a safe space for seeking support on the culturally taboo topic of SRH by counteracting and reducing web-based microaggressions. We sought to make these last-resort safe spaces supportive by reducing and preventing microaggressions, fostering coping strategies, and educating rather than solely punishing perpetrators. We conducted co-design sessions with 14 unmarried Korean women. In the first co-design session, we introduced the term microaggression and collaborated with participants to create base design components aimed at countering and preventing microaggressions. In the second co-design session, participants initially viewed examples of microaggression comments, then designed using the provided base design templates inspired by their suggestions from the first session and finally designed for a scenario where they would be seeking support. We analyzed co-design session transcripts using inductive and deductive methods. Our analysis revealed 6 goals addressing coping strategies, educational approaches, and cultural characteristics shaping participants' designs. Reflective coping strategies were supported through designs that numerically indicate positive support and provide holistic views of diverse perspectives, helping participants reassess provocative situations with cognitive clarity. Suppressive coping strategies were fostered by encouraging less-emotional responses, empowering participants to address microaggressions logically without self-blame. Educational approaches emphasized fostering shared awareness of microaggressions and providing respectful education for perpetrators about the harm their words can cause. Participants suggested counterspeech mechanisms, including rephrasing suggestions and public educational resources, to balance education with freedom of expression. They also proposed that forum-approved experts guide discussions to ensure accurate, empathetic responses and support users in addressing nuanced situations effectively. Cultural characteristics heavily influenced these goals. Participants noted the nebulous nature of microaggressions, their reluctance to burden their social support network, and societal perceptions of women as overly emotional-all of which shaped their desire for designs that enhance logical justification. For example, participants preferred tools such as expert-led discussions and comprehensive perspectives to rationalize their experiences while reducing stigma. Our work advocates for prioritizing educational and explanatory approaches over punitive detection and deletion measures to create supportive web-based spaces for individuals discussing stigmatized SRH. By integrating culturally informed coping strategies, counter speech mechanisms, and educational designs, these tools empower microaggression targets and allies while fostering reflection and behavior change among perpetrators. Our work provides a first step toward counteracting microaggressions and ultimately encouraging women to seek the needed SRH care.

When patients need health information to manage their personal health, they turn to both health professionals and other patients. Yet, we know little about how the information exchanged among patients (ie, patient expertise) contrasts with the information offered by health professionals (ie, clinician expertise). Understanding how patients' experiential expertise contrasts with the medical expertise of health professionals is necessary to inform the design of peer-support tools that meet patients' needs, particularly with the growing prevalence of largely unguided advice sharing through Internet-based social software. The objective of our study was to enhance our understanding of patient expertise and to inform the design of peer-support tools. We compared the characteristics of patient expertise with that of clinician expertise for breast cancer. Through a comparative content analysis of topics discussed and recommendations offered in Internet message boards and books, we contrasted the topic, form, and style of expertise shared in sources of patient expertise with sources of clinician expertise. Patient expertise focused on strategies for coping with day-to-day personal health issues gained through trial and error of the lived experience; thus, it was predominately personal in topic. It offered a wealth of actionable advice that was frequently expressed through the narrative style of personal stories about managing responsibilities and activities associated with family, friends, work, and the home during illness. In contrast, clinician expertise was carried through a prescriptive style and focused on explicit facts and opinions that tied closely to the health care delivery system, biomedical research, and health professionals' work. These differences were significant between sources of patient expertise and sources of clinician expertise in topic (P < .001), form (P < .001), and style (P < .001). Patients offer other patients substantial expertise that differs significantly from the expertise offered by health professionals. Our findings suggest that experienced patients do not necessarily serve as \"amateur doctors\" who offer more accessible but less comprehensive or detailed medical information. Rather, they offer valuable personal information that clinicians cannot necessarily provide. The characteristics of patient expertise and the resulting design implications that we identified will help informaticians enhance the design of peer-support tools that will help meet patients' diverse information needs.

Access to virtual care has increased since the beginning of the COVID-19 pandemic, yet little is known about transgender and gender-diverse (TGD) youth's experiences and perspectives on receiving care via telemedicine. The purpose of this study was to explore these experiences to (1) inform necessary changes to the provision of pediatric gender-affirming care and (2) help providers and health systems determine if and how telemedicine should be made available post pandemic. Youth (aged 14-17 years) who completed a telemedicine visit in the Seattle Children's Gender Clinic were invited to participate in a semistructured interview exploring perceived advantages or disadvantages of telemedicine and preferred visit modalities. Interview transcriptions were analyzed by 2 research team members using an inductive thematic analysis framework. A total of 15 TGD youth completed an interview. Commonly cited advantages of telemedicine were convenience and comfort with having visits in their own environments. Reported disadvantages included technical issues, discomfort with the impersonal nature, lack of familiarity with the platform, and privacy concerns. Overall, slightly more youth preferred in-person visits over telemedicine, referencing both specific characteristics of the clinical visit (ie, initial vs return and complexity) and proximity to the clinic as reasons for this preference. Although a plurality of TGD youth preferred in-person visits, they also recognized the value of telemedicine and the impact it may have in facilitating access to care. Given the variations in needs and visit complexity, our study supports the provision of both in-person and telemedicine modalities as options for pediatric gender-affirming care.

Access to gender-affirming care services for transgender and gender-diverse youths is limited, in part because this care is currently provided primarily by specialists. Telehealth platforms that enable primary care providers (PCPs) to receive education from and consult specialists may help improve the access to such services. However, little is known about PCPs' preferences regarding receiving this support. This study aimed to explore pediatric PCPs' perspectives regarding optimal ways to provide telehealth-based support to facilitate gender-affirming care provision in the primary care setting. PCPs who had previously requested support from the Seattle Children's Gender Clinic were recruited to participate in semistructured, 1-hour web-based interviews. Overall, 3 specialist-to-PCP telehealth modalities (tele-education, electronic consultation, and telephonic consultation) were described, and the participants were invited to share their perspectives on the benefits and drawbacks of each modality, which modality would be the most effective, and the most important characteristics or outcomes of a successful platform. Interviews were transcribed and analyzed using a reflexive thematic analysis framework. The interviews were completed with 15 pediatric PCPs. The benefits of the tele-education platform were developing a network with other PCPs to facilitate shared learning, receiving comprehensive didactic and case-based education, having scheduled education sessions, and increasing provider confidence. The drawbacks were requiring a substantial time commitment and not allowing for real-time, patient-specific consultation. The benefits of the electronic consultation platform were convenient and efficient communication, documentation in the electronic health record, the ability to bill for provider time, and sufficient time to synthesize information. The drawbacks of this platform were electronic health record-related difficulties, text-based communication challenges, inability to receive an answer in real time, forced conversations with patients about billing, and limitations for providers who lack baseline knowledge. With respect to telephonic consultation, the benefits were having a dialogue with a specialist, receiving compensation for PCP's time, and helping with high acuity or complex cases. The drawbacks were challenges associated with using the phone for communication, the limited expertise of the responding providers, and the lack of utility for nonemergent issues. Regarding the most effective platform, the responses were mixed, with 27% (4/15) preferring the electronic consultation, 27% (4/15) preferring tele-education, 20% (3/15) preferring telephonic consultation, and the remaining 27% (4/15) suggesting a hybrid of the 3 models. A diverse suite of telehealth-based training and consultation services must be developed to meet the needs of PCPs with different levels of experience and training in gender-affirming care. Beyond the widely used telephonic consultation model, electronic consultation and tele-education may provide important alternative training and consultation opportunities to facilitate greater PCP independence and promote wider access to gender-affirming care.

For many people, tracking health indicators is central to managing a chronic illness. However, previous informatics research has largely viewed tracking as a solitary process that lacks the characteristics essential to tracking in support of chronic illness management. To inform development of effective technologies that aid tracking of health indicators to support chronic illness management, this study aimed to construct a health informatics model that accurately describes the work and social context of that tracking work. As part of a larger project, we conducted semistructured interviews with 40 adults concerning their chronic illness management practices, including tracking and communication. We also assembled transcripts of 30 publicly available videos of 24 adults discussing tracking processes for managing their own chronic illness. We used qualitative methods to analyze interviews and video transcripts through the lens of ongoing personal and health informatics research. We have described the people and work involved in tracking in support of chronic illness management and contributed a Conceptual Model of Shared Health Informatics (CoMSHI). Specifically, we identified the need for a health informatics model that (1) incorporates the ongoing nature of tracking work and (2) represents the social dimension of tracking for illness management. Our model depicts communication, information, collection, integration, reflection, and action work in the social context of the person with chronic illness, informal carers, health care providers, and community members. The resulting CoMSHI yields a more detailed and nuanced viewpoint of tracking in support of chronic illness management and can inform technology design to improve tracking tools to support people in more confident and capable chronic illness management.

Current electronic health records (EHRs) contribute to increased physician cognitive workload when completing clinical tasks. To assess the association of different design features of an EHR-based information visualization tool with the cognitive load of physicians during the clinical prioritization process. This cross-sectional study included a convenience sample of 29 attending physicians at Seattle Children's Hospital, a large tertiary academic pediatric hospital. Data collection took place from August 2017 through October 2017, and analysis occurred from August to October 2018. Physician participants used 3 prototypes with novel visualizations of simulated EHR data that highlighted 1 of 3 key patient characteristics, as follows: (1) acuity, (2) clinical problem list, and (3) clinical change. Cognitive workload was measured using the NASA Task Load Index (TLX) scale (range, 1-100, with lower scores indicating lower cognitive workload). Cognitive workload was assessed for the 2 following clinical prioritization tasks: (1) finding information for a specific patient and (2) comparing results among patients for each prototype. Participants ranked 5 hypothetical patients from having the highest to the lowest priority in each design. A total of 29 physician participants (15 [52%] men; 14 [48%] women; mean [range] age, 43 [35-58] years; mean [range] time in practice, 11 [3-30] years) completed the study. For task 1, the prototype highlighting clinical change was associated with lower median (interquartile range) NASA TLX scores compared with the prototype highlighting acuity (30.3 [15.2-41.6] vs 48.5 [18.7-59.3]; P = .02). For task 2, the prototype highlighting clinical change was associated with lower median (interquartile range) NASA TLX scores compared with the prototype highlighting the clinical problem list (29.1 [16.3-50.8] vs 43.5 [26.6-55.9]; P = .02). The prototype highlighting clinical change had the lowest TLX score in 17 of 29 rankings (59%) for task 1 (χ24 = 24.4; P < .001) and 18 of 29 rankings (62%) for task 2 (χ24 = 17.2; P = .002). In this study, well-designed EHR-based information visualizations that highlighted and featured clinically meaningful information patterns significantly reduced physician cognitive workload when prioritizing patient needs.

As people increasingly receive personal health information through technology, there is increased importance for this information to be communicated with empathy and consideration for the patient's experience of consuming it. Although technology enables people to have more frequent and faster access to their health information, it could also cause unnecessary anxiety, distress, or confusion because of the sensitive and complex nature of the information and its potential to provide information that could be considered bad news. The aim of this study was to uncover insights for the design of health information technologies that potentially communicate bad news about health such as the result of a diagnosis, increased risk for a chronic or terminal disease, or overall declining health. On the basis of a review of established guidelines for clinicians on communicating bad news, we developed an interview guide and conducted interviews with patients, patients' family members, and clinicians on their experience of delivering and receiving the diagnosis of a serious disease. We then analyzed the data using a thematic analysis to identify overall themes from a perspective of identifying ways to translate these strategies to technology design. We describe qualitative results combining an analysis of the clinical guidelines for sharing bad health news with patients and interviews on clinicians' specific strategies to communicate bad news and the emotional and informational support that patients and their family members seek. Specific strategies clinicians use included preparing for the patients' visit, anticipating patients' feelings, building a partnership of trust with patients, acknowledging patients' physical and emotional discomfort, setting up a scene where patients can process the information, helping patients build resilience and giving hope, matching the level of information to the patients' level of understanding, communicating face-to-face, if possible, and using nonverbal means. Patient and family member experiences included internal turmoil and emotional distress when receiving bad news and emotional and informational support that patients and family members seek. The results from this study identify specific strategies for health information technologies to better promote empathic communication when they communicate concerning health news. We distill the findings from our study into design hypotheses for ways technologies may be able to help people better cope with the possibility of receiving bad health news, including tailoring the delivery of information to the patients' individual preferences, supporting interfaces for sharing patients' context, mitigating emotional stress from self-monitoring data, and identifying clear, actionable steps patients can take next.

Patients increasingly use online health communities to exchange health information and peer support. During the progression of health discussions, a change of topic-topic drift-can occur. Topic drift is a frequent phenomenon linked to incoherence and frustration in online communities and other forms of computer-mediated communication. For sensitive topics, such as health, such drift could have life-altering repercussions, yet topic drift has not been studied in these contexts. Our goals were to understand topic drift in online health communities and then to develop and evaluate an automated approach to detect both topic drift and efforts of community members to counteract such drift. We manually analyzed 721 posts from 184 threads from 7 online health communities within WebMD to understand topic drift, members' reaction towards topic drift, and their efforts to counteract topic drift. Then, we developed an automated approach to detect topic drift and counteraction efforts. We detected topic drift by calculating cosine similarity between 229,156 posts from 37,805 threads and measuring change of cosine similarity scores from the threads' first posts to their sequential posts. Using a similar approach, we detected counteractions to topic drift in threads by focusing on the irregular increase of similarity scores compared to the previous post in threads. Finally, we evaluated the performance of our automated approaches to detect topic drift and counteracting efforts by using a manually developed gold standard. Our qualitative analyses revealed that in threads of online health communities, topics change gradually, but usually stay within the global frame of topics for the specific community. Members showed frustration when topic drift occurred in the middle of threads but reacted positively to off-topic stories shared as separate threads. Although all types of members helped to counteract topic drift, original posters provided the most effort to keep threads on topic. Cosine similarity scores show promise for automatically detecting topical changes in online health discussions. In our manual evaluation, we achieved an F1 score of .71 and .73 for detecting topic drift and counteracting efforts to stay on topic, respectively. Our analyses expand our understanding of topic drift in a health context and highlight practical implications, such as promoting off-topic discussions as a function of building rapport in online health communities. Furthermore, the quantitative findings suggest that an automated tool could help detect topic drift, support counteraction efforts to bring the conversation back on topic, and improve communication in these important communities. Findings from this study have the potential to reduce topic drift and improve online health community members' experience of computer-mediated communication. Improved communication could enhance the personal health management of members who seek essential information and support during times of difficulty.

The prevalence and value of patient-generated health text are increasing, but processing such text remains problematic. Although existing biomedical natural language processing (NLP) tools are appealing, most were developed to process clinician- or researcher-generated text, such as clinical notes or journal articles. In addition to being constructed for different types of text, other challenges of using existing NLP include constantly changing technologies, source vocabularies, and characteristics of text. These continuously evolving challenges warrant the need for applying low-cost systematic assessment. However, the primarily accepted evaluation method in NLP, manual annotation, requires tremendous effort and time. The primary objective of this study is to explore an alternative approach-using low-cost, automated methods to detect failures (eg, incorrect boundaries, missed terms, mismapped concepts) when processing patient-generated text with existing biomedical NLP tools. We first characterize common failures that NLP tools can make in processing online community text. We then demonstrate the feasibility of our automated approach in detecting these common failures using one of the most popular biomedical NLP tools, MetaMap. Using 9657 posts from an online cancer community, we explored our automated failure detection approach in two steps: (1) to characterize the failure types, we first manually reviewed MetaMap's commonly occurring failures, grouped the inaccurate mappings into failure types, and then identified causes of the failures through iterative rounds of manual review using open coding, and (2) to automatically detect these failure types, we then explored combinations of existing NLP techniques and dictionary-based matching for each failure cause. Finally, we manually evaluated the automatically detected failures. From our manual review, we characterized three types of failure: (1) boundary failures, (2) missed term failures, and (3) word ambiguity failures. Within these three failure types, we discovered 12 causes of inaccurate mappings of concepts. We used automated methods to detect almost half of 383,572 MetaMap's mappings as problematic. Word sense ambiguity failure was the most widely occurring, comprising 82.22% of failures. Boundary failure was the second most frequent, amounting to 15.90% of failures, while missed term failures were the least common, making up 1.88% of failures. The automated failure detection achieved precision, recall, accuracy, and F1 score of 83.00%, 92.57%, 88.17%, and 87.52%, respectively. We illustrate the challenges of processing patient-generated online health community text and characterize failures of NLP tools on this patient-generated health text, demonstrating the feasibility of our low-cost approach to automatically detect those failures. Our approach shows the potential for scalable and effective solutions to automatically assess the constantly evolving NLP tools and source vocabularies to process patient-generated text.

CSCW has long been concerned with the distribution of activities in time and in space, but the problems of distributed work have often taken analytic and technical precedence. In this paper, we are interested in the issue of temporality in collaborative work. In particular, we want to examine how the temporal organization of action is experienced by those who are involved in it. To investigate this phenomenon, we conducted a field study of medical workers in a surgical intensive care unit. Through this study, we highlight the temporal organization of the work. In particular, we introduce and describe three temporal features – temporal trajectories, temporal rhythms, and temporal horizons – that emerge from and influence the work of healthcare providers as they attempt to seek, provide, and manage information during the course of their daily work.